Another Newbie... :)

[Prolaf]

Hi all,

I'm newly diagnosed and new to the forums so please forgive any decorum related issues. Just been diagnosed after my HbA1c numbers more than doubled between pre-op assessments for surgery on something else. Seem the pancreas that got badly damaged by a pseudocyst after gallstones invaded (and were fished out by MRCP(?)) some 6 years ago is finally beginning to give up the ghost. Had levels of 18.1 which have reduced since I switched diets and went low carb and removed processed food, so they've put me on 8 units of 'background' insulin a day.

Any idea what the general process is from here in the NHS for getting further checks done etc as the GP has just handed me over to the local hospital team about 2 weeks ago? Like @jsw most of the info I'm gleaming is from the internet as I was just given the background insulin and have had 1 follow up call from the nursing team.

Cheers,
Olaf

 

[Vonny]

Hi @Prolaf and welcome to the forum. There are some type 3cs here who I hope will be along soon to give you an idea of what checks are likely to be performed, and when. I suspect the timescales may vary between trusts. Where I live I got fantastic service for my type 2 from day 1: our surgery has its own DN, there is a local retinal screening department etc etc. I live in a pretty deprived area in the north, and T2 is fairly rife which is probably why the facilities are so good!

Lovely to have you on board 🙂

 

[everydayupsanddowns]

Welcome to the forum @Prolaf

Sorry to hear about the damage to your pancreas.

@eggyg is probably our most prolific type 3c poster, but we have several others, and various other ‘creonistas’ as @mikeyB used to say - including @Hepato-pancreato @martindt1606 @Proud to be erratic @stackingcups and @soupdragon

Hope the carb reduction and insulin help to balance your BGs in the coming weeks. Do be cautious about lowering your carbs while taking insulin though as the two do need to balance.

Do you need to take Creon?

 

[soupdragon]

Welcome @Prolaf from another Type 3c. In my case it was pancreatitis that left me with very little pancreas. Did you have pancreatitis due to the gallstones? A pseudocyst is about the only pancreatitis complication that I managed to avoid!

Hope things are settling for you. Are you using Creon to help with digestion? I find juggling the Creon and insulin can make life interesting at times. It's always good when the juggling works but sometimes my juggling skills are not perfect!

In terms of checks it does seem that who carries out which checks varies in different parts of the country. I'm under the hospital team which means a consultant appointment approximately every 6 months and access to a great team of Diabetes Specialist Nurses by phone if any issues crop up between appointments (there was more input at the start from the DSNs and dietician for carb counting etc). There was a bit of confusion at first as to which tests were carried out by the GP surgery and which by the hospital. Currently the blood tests are done by the hospital, kidney function urine test by GP and, as I have podiatry appointments at the moment, I get my diabetic foot checks done then. Eye checks for retinopathy are carried out separately.
It's good that you're getting specialist input from the hospital, as they should be more familiar with dealing with diabetes due to pancreatic damage than most GPs.
It might be worth checking with the hospital team which checks they will carry out.

I'm guessing that your low carb approach is helping your diabetes management at the moment. Although officially I can eat as many carbs as I want and inject the right amount of insulin, I find things much easier to manage if I eat a fairly low carb diet, especially in the evening.

There's such a huge learning curve at the start that it can be quite overwhelming.
Do let us know how you're getting on and if there are any questions that we might be able to help with.

 

[martindt1606]

Hi @Prolaf in 2003 I had various scans and tests following on from an an odd blood test. They eventually found a Gall Stone and the decision was taken to take it out via a whipple style operation so that they could look at the Pancreas. They had hoped the suspected Pancreas damage was due to scaring from the gall stone but found a Neuroendocrine Tumour, which they decided to watch (regular scans). Following the operation I started on creon to assist food digestion. Luckily had no blood sugar issues at this stage. Once the tumours were deemed to be an issue they whipped out the Pancreas in 2010 and introduced me to the Type 1 Diabetic clinic where over the years we progressed through multiple MDI regimes until I eventually got a budget for a pump from the hospitals special reserve fund. Having not considered diabetes before the operations it took probably 30 months to become relatively confident that i knew what I was doing - main reasons were a very good Type 1 nurse at clinic, competing the DAFNE course (where I learned carb counting and the potential impact of illness, stress, exercise etc), and some good feedback from @Northerner (although he probably won't remember). Keep positive.....I'm nearly 12 years without a Pancreas and last month started playing walking football, expected it to be a one off but have made 4 sessions todate.

 

[Prolaf]

Welcome to the forum @Prolaf

Sorry to hear about the damage to your pancreas.

@eggyg is probably our most prolific type 3c poster, but we have several others, and various other ‘creonistas’ as @mikeyB used to say - including @Hepato-pancreato @martindt1606 @Proud to be erratic @stackingcups and @soupdragon

Hope the carb reduction and insulin help to balance your BGs in the coming weeks. Do be cautious about lowering your carbs while taking insulin though as the two do need to balance.

Do you need to take Creon?

Thanks for the welcome and response! 🙂 I'm not on Creon at the moment - I've just been put on 8 units of 'background' insulin as my levels have come down from 18+ to around 6.5 (average for the week). Have had some major issues with bloating eating healthy stuff though! Not pleasant for anyone! There are a could of other responses which are brilliant and much appreciated. Will definitely be spending more time on the forum.

There is just so much information to try to take in on top of worries about what might be going on with whatever's left of my pancreas. Thanks again!
Cheers
Olaf

 

[Prolaf]

Welcome @Prolaf from another Type 3c. In my case it was pancreatitis that left me with very little pancreas. Did you have pancreatitis due to the gallstones? A pseudocyst is about the only pancreatitis complication that I managed to avoid!

Hope things are settling for you. Are you using Creon to help with digestion? I find juggling the Creon and insulin can make life interesting at times. It's always good when the juggling works but sometimes my juggling skills are not perfect!

In terms of checks it does seem that who carries out which checks varies in different parts of the country. I'm under the hospital team which means a consultant appointment approximately every 6 months and access to a great team of Diabetes Specialist Nurses by phone if any issues crop up between appointments (there was more input at the start from the DSNs and dietician for carb counting etc). There was a bit of confusion at first as to which tests were carried out by the GP surgery and which by the hospital. Currently the blood tests are done by the hospital, kidney function urine test by GP and, as I have podiatry appointments at the moment, I get my diabetic foot checks done then. Eye checks for retinopathy are carried out separately.
It's good that you're getting specialist input from the hospital, as they should be more familiar with dealing with diabetes due to pancreatic damage than most GPs.
It might be worth checking with the hospital team which checks they will carry out.

I'm guessing that your low carb approach is helping your diabetes management at the moment. Although officially I can eat as many carbs as I want and inject the right amount of insulin, I find things much easier to manage if I eat a fairly low carb diet, especially in the evening.

There's such a huge learning curve at the start that it can be quite overwhelming.
Do let us know how you're getting on and if there are any questions that we might be able to help with.

Thanks for responding @soupdragon - much appreciated.
The checks you've listed make a brilliant tick list! I'll be trying to get the monitoring regime up and running. Would it be normal to have liver function checks done too? And I've read about C-Peptide levels but can't get my head around them at the minute - should I be talking to the support team about those?

My problems came about because of my own stupidity - I had gallstones, knew I had gallstone, was warned about what damage they could do - then my GP suggested using buscopan instead of surgery - easy option and I was right there till after years of mini attacks I ended up on the floor of the disabled toilet in the office pulling on the red string. They had to fish gallstones out of both my pancreas and liver (MRCP(?)) and the pseudocyst followed with a number of infections in it while the pancreas digested itself.

Hospital team seam ready to do a scan - just waiting on a date.

Feel like I'm not even making a dent in the knowledge I need to build at the moment so any recomendations on good books that have commentary for us 3c's would be appreciated.

 

[Prolaf]

Hi @Prolaf in 2003 I had various scans and tests following on from an an odd blood test. They eventually found a Gall Stone and the decision was taken to take it out via a whipple style operation so that they could look at the Pancreas. They had hoped the suspected Pancreas damage was due to scaring from the gall stone but found a Neuroendocrine Tumour, which they decided to watch (regular scans). Following the operation I started on creon to assist food digestion. Luckily had no blood sugar issues at this stage. Once the tumours were deemed to be an issue they whipped out the Pancreas in 2010 and introduced me to the Type 1 Diabetic clinic where over the years we progressed through multiple MDI regimes until I eventually got a budget for a pump from the hospitals special reserve fund. Having not considered diabetes before the operations it took probably 30 months to become relatively confident that i knew what I was doing - main reasons were a very good Type 1 nurse at clinic, competing the DAFNE course (where I learned carb counting and the potential impact of illness, stress, exercise etc), and some good feedback from @Northerner (although he probably won't remember). Keep positive.....I'm nearly 12 years without a Pancreas and last month started playing walking football, expected it to be a one off but have made 4 sessions todate.

Thanks for the response @martindt1606 - you give me hope that there's a good chance they can find a solution - I keep reading that the pseudocyst is a forerunner of pancreatic cancer and the survival rates are minimal. Feel like a drama queen actually admitting that!

What's an MDI regime please?

I've had some digestion issues (mainly fast and heavy bloating) which I take apple cider vinegar in water for (it helps) - is that what Creon is supposed to support too?

It's years since I played football - maybe need to have a look and see what's happening. I'm never going to get away from stress (are any of us?) so need to find a good distraction.

Thanks again!
Cheers
Olaf

 

[Prolaf]

Is there a section of the forum dedicated to 3c?

 

[Prolaf]

Hi @Prolaf and welcome to the forum. There are some type 3cs here who I hope will be along soon to give you an idea of what checks are likely to be performed, and when. I suspect the timescales may vary between trusts. Where I live I got fantastic service for my type 2 from day 1: our surgery has its own DN, there is a local retinal screening department etc etc. I live in a pretty deprived area in the north, and T2 is fairly rife which is probably why the facilities are so good!

Lovely to have you on board 🙂

Thanks Vonny 🙂 appreciate the welcome!

 

[Proud to be erratic]

Hi all,

I'm newly diagnosed and new to the forums so please forgive any decorum related issues. Just been diagnosed after my HbA1c numbers more than doubled between pre-op assessments for surgery on something else. Seem the pancreas that got badly damaged by a pseudocyst after gallstones invaded (and were fished out by MRCP(?)) some 6 years ago is finally beginning to give up the ghost. Had levels of 18.1 which have reduced since I switched diets and went low carb and removed processed food, so they've put me on 8 units of 'background' insulin a day.

Any idea what the general process is from here in the NHS for getting further checks done etc as the GP has just handed me over to the local hospital team about 2 weeks ago? Like @jsw most of the info I'm gleaming is from the internet as I was just given the background insulin and have had 1 follow up call from the nursing team.

Cheers,
Olaf

Hi @Prolaf ,
I'm Type 3c following a total pancreatectomy in Feb 2020. At this stage I'm just putting my head very briefly above the parapet, principally to say Hello and I'm monitoring this thread.

My experience over the last 20 months has been both interesting and frustrating. There are various tests that insulin diabetics are entitled to; for me some have happened seamlessly, eg annual Eye tests. Some I've had to ask for and I usually ask my GP first; eg my first HbA1c was at my request after about 6 months and I've had to request these ever since. I live in Bucks but following continuous difficulties with my DM management, the Churchill Hospital in Oxford (who did the pancreatectomy) in October kindly referred me back to the Oxford team for Diabetes, Endocrinology and Metabolism. Bucks promptly signed me off, seemingly they can't manage this cross border business. My GP decided that the routine reviews in the Practice were not needed since I was getting special assistance from Oxford and my recent HbA1c test result was emailed to me; I asked if that could also be sent bybthe Practice to the Oxford Consultant and I was told to forward the email result myself. Oh, yes, I should point out that Bucks can't see electronic records from Oxford and vice-versa; it seems that Trusts don't trust other Trusts, so won't share records.

Bottom line - it's my diabetes and I need to co-ordinate the data coming in from the various specialists who are kindly looking after me, in Bucks and Oxon. Fortunately I can do that.

MDI is Multiple Daily Injections. I take one daily slow (basal) insulin, which is intended to keep me ticking over 24 hrs a day, before I start eating. And I take 2 - 4 faster (bosul) injections, for up to 3 daily meals and possibly one correction if I'm above 9 as I go to bed. I diligently carb count.

I also take Creon capsules (one of 4 possible medications for digestion) which are generically described as Pancreatic Enzyme Replacement Therapy (PERT). Apart from your pancreas producing the hormone insulin, it also produces 3 other (important) hormones and the essential digestive enzymes. Having no pancreas means I have to be my own artificial pancreas; I'm still learning!

The main underlying point is that T3c is complicated (and extremely varied for different people) and most medical practitioners have never heard of it. So it would be a rare GP surgery that knows what you might need; you need to be firmly under a Specialist Hospital Team for now. In due course you will probably know more than most Specialists - but not this week, month or next year I suggest. You are akin to a T1, being insulin dependent, but T3c from damage to your pancreas, rather than the immune system defect that seems to be the cause of T1.

All that said, I'm still here (and grateful). For me the more I investigate the more knowledge I get about DM and Metabolism in a wider sense; and my perspective is that knowledge helps dispel fear. Feel free to ask any question, someone on this site will probably know the answer.

 

[Proud to be erratic]

Sorry, @Prolaf,
You asked about books. I found "Think Like a Pancreas" by Gary Scheiner to be really good for my inquisitiveness. I also have "Type 1 Diabetes, in children, adolescents and young adults" by Dr Ragnar Hanas, which is fine for me as a man over 70!

But I also glean a lot from this site; looking at US sites is OK, but they use imperial units and have different approaches to specific topics, which I found a bit confusing so don't very often read any in depth papers from US journals.

 

[martindt1606]

Thanks for the response @martindt1606 - you give me hope that there's a good chance they can find a solution - I keep reading that the pseudocyst is a forerunner of pancreatic cancer and the survival rates are minimal. Feel like a drama queen actually admitting that!

What's an MDI regime please?

I've had some digestion issues (mainly fast and heavy bloating) which I take apple cider vinegar in water for (it helps) - is that what Creon is supposed to support too?

It's years since I played football - maybe need to have a look and see what's happening. I'm never going to get away from stress (are any of us?) so need to find a good distraction.

Thanks again!
Cheers
Olaf

Hi Olaf,

MDI - mutiple daily injections, basically bolus fast acting with meals plus the longer acting injection in the evening and/or morning.

Creon - multiple capsules taken with most foods (especially fatty meals). Currently up to 16 per meal. Makes meal times great fun, not only carb counting for insulin but also considering how much fat in the meal for the Creon. Main use of Creon is to digest food - symptoms are more related to the state of what passes through than bloating.

I hadn't played football for 26 years - can't forget, i took my wife to maternity having got back from 5 a side and the mid wife sent me to casualty). Its only walking but 30 - 40 turn up to kick a ball for 40 minutes. Gets me out the house. Small cost - I need at least 80 additional carbs to get through the game.

 

[Prolaf]

Sorry, @Prolaf,
You asked about books. I found "Think Like a Pancreas" by Gary Scheiner to be really good for my inquisitiveness. I also have "Type 1 Diabetes, in children, adolescents and young adults" by Dr Ragnar Hanas, which is fine for me as a man over 70!

But I also glean a lot from this site; looking at US sites is OK, but they use imperial units and have different approaches to specific topics, which I found a bit confusing so don't very often read any in depth papers from US journals.

Thanks so much @Proud to be erratic for both posts....lots to process and lots to learn and trying to gain clarity about what has an effect on what is just mystifying at the moment. I've grabbed the book you recommended and will get some serious studying done!

 

[Prolaf]

Hi Olaf,

MDI - mutiple daily injections, basically bolus fast acting with meals plus the longer acting injection in the evening and/or morning.

Creon - multiple capsules taken with most foods (especially fatty meals). Currently up to 16 per meal. Makes meal times great fun, not only carb counting for insulin but also considering how much fat in the meal for the Creon. Main use of Creon is to digest food - symptoms are more related to the state of what passes through than bloating.

I hadn't played football for 26 years - can't forget, i took my wife to maternity having got back from 5 a side and the mid wife sent me to casualty). Its only walking but 30 - 40 turn up to kick a ball for 40 minutes. Gets me out the house. Small cost - I need at least 80 additional carbs to get through the game.

Thanks @martindt1606 - the scary thing is it looks like its a real science and discipline keeping on top of the carb counting, level taking and compensation etc. At the moment I'm lucky being on basal(?) insulin - but with 3c I know the time will come when I need to be as on top of this as you and the other kind folks on here.
Interesting about the creon though - wonder if my enzyme production is packing up with the bloating I've been doing recently or whether that's just part of the whole package? Or maybe jus the drastic change in diet from a poor diet to one that's wiped out carbs and virtually anything processed (thanks to my good lady who's massively on top of her nutrition being at the nasty end of the coeliac scale).

 

[Prolaf]

All - I really can't thank you enough for jumping in on this thread and helping. I'll be spending a fair bit of time on these forums over the next few years I think! You are all very generous with your time - it is much appreciated.

 

[Proud to be erratic]

All - I really can't thank you enough for jumping in on this thread and helping. I'll be spending a fair bit of time on these forums over the next few years I think! You are all very generous with your time - it is much appreciated.

Hi again @Olaf,
Since you are currently only taking basal insulin you could reasonably put carb counting lower down the scale of what to look at first. And I realise you are already on a low carb diet, but keep in mind that your body needs glucose, which normally comes from carbs; if you give it very few carbs it will convert protein and fats into the glucose it must have. But there are risks of ketones being manufactured possibly leading to diabetic ketoacidosis (DKA) which can be dangerous. People with DM do follow the low carb route, so it can be safely done.

Anyway getting a solid understanding of the balance between carbs, proteins and fats that works best for you might be a higher priority. Also within the carbs, understanding what the Glycaemic Index is of the different carb foods and how they affect you might also be useful. Both of these will stand you in good stead if you do end up needing rapid (bosul) insulin; meanwhile both could help you steer away from foods that don't work so well for you - and why they don't work.

How are you currently testing your BG and at what frequency?

 

[Prolaf]

Hi again @Olaf,
Since you are currently only taking basal insulin you could reasonably put carb counting lower down the scale of what to look at first. And I realise you are already on a low carb diet, but keep in mind that your body needs glucose, which normally comes from carbs; if you give it very few carbs it will convert protein and fats into the glucose it must have. But there are risks of ketones being manufactured possibly leading to diabetic ketoacidosis (DKA) which can be dangerous. People with DM do follow the low carb route, so it can be safely done.

Anyway getting a solid understanding of the balance between carbs, proteins and fats that works best for you might be a higher priority. Also within the carbs, understanding what the Glycaemic Index is of the different carb foods and how they affect you might also be useful. Both of these will stand you in good stead if you do end up needing rapid (bosul) insulin; meanwhile both could help you steer away from foods that don't work so well for you - and why they don't work.

How are you currently testing your BG and at what frequency?

Testing my BG 4x a day at the moment using a Freestyle Optium neo blood glucose monitor and ketones every other day with pee strips - GP to tight to prescribe the keytone strips that go with the meter lol 🙂

BG's started off at over 18.1 three weeks ago when I went for a pre-op for a hernia that needs some TLC. Currently have it sat between 6 & 9.

On the carb front it might explain why I've had a few days where my legs just didn't like having to walk very far - will keep an eye on that.

 

[soupdragon]

Thanks for responding @soupdragon - much appreciated.
The checks you've listed make a brilliant tick list! I'll be trying to get the monitoring regime up and running. Would it be normal to have liver function checks done too? And I've read about C-Peptide levels but can't get my head around them at the minute - should I be talking to the support team about those?

My problems came about because of my own stupidity - I had gallstones, knew I had gallstone, was warned about what damage they could do - then my GP suggested using buscopan instead of surgery - easy option and I was right there till after years of mini attacks I ended up on the floor of the disabled toilet in the office pulling on the red string. They had to fish gallstones out of both my pancreas and liver (MRCP(?)) and the pseudocyst followed with a number of infections in it while the pancreas digested itself.

Hospital team seam ready to do a scan - just waiting on a date.

Feel like I'm not even making a dent in the knowledge I need to build at the moment so any recomendations on good books that have commentary for us 3c's would be appreciated.

Hi @Prolaf .
I see you've been given some recommendations for books. I'd second the suggestion of think like a pancreas, which I've found very useful.

Have just checked the blood test form I've been sent ready for my next review and liver function tests have been included.

About the C peptide test, that would be useful at some point to find out how much insulin you're producing. I asked for one this year. As far as I knew I'd never had one done. I think it was assumed that I was hardly producing any insulin as I have so little pancreas left. Apparently I am producing a little, which should be useful.
Hopefully your scan will give you an indication of how things are for you and information from a C peptide test will add to that.

 

[soupdragon]

Testing my BG 4x a day at the moment using a Freestyle Optium neo blood glucose monitor and ketones every other day with pee strips - GP to tight to prescribe the keytone strips that go with the meter lol 🙂

BG's started off at over 18.1 three weeks ago when I went for a pre-op for a hernia that needs some TLC. Currently have it sat between 6 & 9.

On the carb front it might explain why I've had a few days where my legs just didn't like having to walk very far - will keep an eye on that.

Those blood glucose readings look great. Just keep a close eye on them in case they keep dropping to hypo levels. Have you got some hypo treatments ready in case they're needed?